Thursday, March 7, 2013

The Greek, In Memoriam

About two and half years ago I was hospitalized with very high fevers. It turned out I had a bizarre case of meningitis, which of course was extremely debilitating and terribly frightening, greatly exacerbating my very heat sensitive creeping paralysis. A short time after I returned home from the hospital, I was greeted with a great big gift basket, filled with all kinds of delicious goodies. To my immense surprise, the basket came from a man in Detroit that I had met only a few months earlier, and had exchanged several emails and phone calls with. He was a fellow MS sufferer, and I had little inkling at the time that we would soon develop a long-distance connection that would eventually transcend friendship and approach something akin to brotherhood.

The man who sent that basket was George Bokos, the self-described “Greek From Detroit”, who died early last Sunday morning. Although it seems almost de rigueur to offer such platitudes in this kind of essay, in George’s case the following are the absolute truth: he was one of the kindest, gentlest, most generous and good-natured people that it’s ever been my privilege to know. He was smart and funny, a master of sarcasm. In his own way, for better or worse, he was a force of nature, a tremendously emotional man whose heart was his guiding beacon. His friendship was a gift, his loss a heartbreak, and I will miss him as long as I draw breath.

The burdens and constraints imposed by the miserable beast called multiple sclerosis simply became too much for George to bear, and he exited this life on his own terms. The farewell note he left on his blog (click here), though quite forthcoming, only hints at the anguish he suffered. The disease and its wicked gravity robbed him of all he held dear, leaving him bereft of joy, a man whose sense of self was too enmeshed with his physicality to submit to an existence spent bedridden. The ravages of multiple sclerosis broke his tremendous heart and shattered his beneficent spirit. His decline was precipitous, a cruel freefall that proved impossible to break.

I first met George almost exactly 3 years ago, in the office of the Interventional Radiologist who performed both of our CCSVI procedures. I was there with my wife for pre-procedure testing, and George, having had his procedure the previous day, was awaiting his follow-up examination, accompanied by his mom, Hilda. The doctor, who is an avid amateur photographer, hadn’t yet arrived, and I was talking to the office manager, telling her of my photographic efforts using a camera mounted to the arm of my wheelchair. I’d been writing this blog for about a year, and when Hilda overheard my conversation with the office manager, she exclaimed, “Oh my, are you the Wheelchair Kamikaze?” Stunned, I stammered “Yes”, and in a blink Hilda was upon me, showering me with hugs and kisses, thanking me for writing about my life with MS and whatever part I played in helping to bring CCSVI to the attention of the MS population. The four of us had a brief but lively conversation, and then we were on our respective ways. I was tickled by the encounter, thinking it one of those strange bits of serendipity that life sometimes bestows upon us, completely unaware of the bond that George and I would eventually form.

Unfortunately, neither of us benefited from CCSVI treatment. At the time, my disease was fairly advanced and had already forced me to rely on a wheelchair, but George’s MS was far less noticeable, in fact, almost invisible. In the relatively short three years since, MS delivered an unrelenting series of hammer blows to George. It seemed the more he fought, the worse things became, like a man frantically struggling to free himself from a pit of quicksand only to find his every effort resulting in his getting dragged further down. He was tortured by terrible spasticity in his torso, and spasms so painful that at the end he all he could do was lie in bed on his side. He tried to find relief by getting a baclofen pump implanted, but this, like all of his other efforts to save himself, only resulted in a cascade of increasingly dire problems, a grueling saga he powerfully recounted on his blog (click here) Please note, I know many patients who have had fantastic success with the baclofen pump, and George's experience with it shouldn't be considered the norm.

Through it all, George and I became a two-person support group, usually speaking on the telephone at least once a week, sometimes more. We shared some tears, but much more often laughter, both of us marveling at the mind-boggling absurdities of the hand the fates had dealt us. George had a keen sense of humor, and a quick and sharp wit. Together, we would pick apart our miseries as only can be done by those who share them, reveling in the freedom of not needing to maintain a stiff upper lip in each other’s company. Life with MS is filled with irony and paradox, and though many of our conversations began with a recounting of tales of woe, they almost always ended with us joined in a catharsis of fitful laughter, the two of us trading quips and throwing verbal barbs at MS and all its attendant indignities. He called me “Kazmo”, and it seems incredible that I’ll never again hear that voice on the other end of the line. I will miss him so.

Was George perfect? Of course not, none of us are. At times that big heart of his proved a detriment, and overruled his head. His emotions could get the better of him and effect his decision-making, especially when it came to treatment choices. But who could blame him when faced with so frightening a foe, when so little is known about the progressive forms of MS, and when so many alternative treatments are promulgated and overhyped on the Internet? Fear plays a large role in the life of every MS patient, and George's MS was especially aggressive. Over many years I've learned the hard way that discretion is often the better part of valor, a notion that my friend George had a difficult time putting into practice. But he always meant well and acted with the best of intentions, with malice towards no one.

Unlike me, a man who spent much of my lifetime wrestling with neurotic existential angst despite whatever successes I achieved, George was a man with relatively simple needs and desires, incredibly content with the basic pleasures of a happy family life thriving on the fruits of the prosperous business he worked hard to build. As he says in his farewell note, he was in his bliss mowing the lawn, shoveling the snow, or washing his truck, three activities which I would be only all too pleased to pay someone else to do, and if he was still here I’m sure we’d share a chuckle over that one. As is far too common, George’s long marriage tragically fell victim to his disease, and though he battled to remain productive, eventually he had to give up work as well. Losing his family and business, the very anchors of his life, tore his heart out, and inflicted more pain than the disease alone ever could. He loved his children dearly, and his mom Hilda, herself a delight and my treasured friend, was among the brightest lights of his life. She was with him when he died, and says that “he was so happy to finally give MS a kick in the ass that he had a beatific glow and a smile on his face at the last breath.”

I know the “right to die” is a controversial issue, but let nobody ever say that George ended his life rashly, or on a whim. He was simply done suffering the indignities that the disease piles on, the relentless gnawing away of the man he once was. Suffice it to say that the exit he chose was not an easy one. George Bokos was a man who was true to himself, and he took control of his ultimate fate, one of the few things he still had any control over. Proud of his Greek heritage, George remained a Spartan to the end, but it is not that end for which he will be remembered. Though I write this through tears, I know that in time it is only the laughter we shared that will remain. George was one hell of a guy, a unique individual, a true and dear friend, and my comrade in arms. This world is a richer place for having had George in it; it owed him a better fate.

39 comments:

Powerful. Moving. Heartbreaking. I met him only through his blog, but George’s goodness wafted off the page. I am so relieved he kicked MS in the ass. I am sorry you are bereft of your dear friend, but if you hear a laugh and don’t quite know where it’s coming from, it might just be George keeping tabs on you. I hope you find solace somehow. You were blessed to have such an amazing friend.

I do believe that George sent me a little message last week. I won't go into details, but suffice it to say the experience was both surreal and strangely comforting, and I thanked him out loud for letting me know he was okay… Definitely one of the more bizarre experiences in my life…

I had not followed "The Greeks" blog prior to seeing Hilda's comments on your previous post. I was compelled to go back and read every word. His beauty and courage shone clearly on every page. I am devestated but better for having done so. I too hope that you and his family find some measure of solace soon.

I, too, went back and read George's blog from the beginning. Even though I had read most of his posts before, reading his blog as a whole is a very powerful experience. In a way, George's words on the Internet have given him an eternal presence. Well, at least as eternal as the Internet itself…

Marc, this is George's little sister we spoke on the phone the day you called my parents to check on George. Thank you for an absolutely beautiful tribute and more so for being his friend, ear and supporter. I wish u nothing but strength, courage and love fighting this difficult disease!

Kazmo, He's howling with laughter right now, and wondering "What the Hell are you still doing down there"?You were two of a kind and for some reason, MS chooses the finest. Thank you for being his friend and for this beautiful, heartfelt eulogy. I will miss him every day of my life.Hilda...George's Mom

His is a powerful good bye made all the more powerful for its reminder to make time for all those important in our lives.

His is also a reminder for me of what could be just around the corner. His views seemed jaded due to callousness of the world he encountered (Arnold), but he seemed determined his part of the world would see the man living as one should. He had some great advice, and this paragraph is one I'm stealing (OK, quoting):

"Even the healthiest of us have battles throughout the day. We all have our own stories, and as insidious as it may appear to the world, nobody seems to go unscathed. Humor can truly ease the situation. Learn to laugh at yourself a little. I need you all to do me this favor. The next time "running" to the store, "jumping" in to the shower, "grabbing" lunch for the kids, or even "preparing" for the day becomes in anyway a pain in your ass, it is necessary to perform one of two options. Either thank God profusely for the ability and fact you can actually perform and accomplish these tasks without trepidation or consciousness, or take my approach, get your head on straight, make a few jokes, and SLAY YOUR DRAGON! There are no other options."

Marc, I am so sorry that I did not get to know George better than I did. I wish I had reached out to him when I had the chance. Your words make it very clear that he was a warm and wonderful human being and that all of the lives he touched (including yours) were enriched by him. Through his blog and elsewhere on the web he continues to reach out to us all.

Given the rigors of the disease, it's hard enough to keep up with old friends, much less make lasting connections with new ones. Days turn into weeks turn into months, and soon you realize how out of touch with much valued friends you've become. Happens to the sick and healthy alike, but it's especially important for folks like us to keep in touch with those held dear. They won't all necessarily be there when it's convenient to reach out…

I chanced upon the Greek from Detroit blog. George spoke with complete honesty about how MS can mean struggling to eat,drink,eliminate and exist.He and his Mother inspire me to get up and support my daughter but I applaud his choice to be at peace,it is possible to endure hours,days and weeks of indignity but when they become months and years the tipping point arrives and mercy is all that you pray for.Beautiful people are tortured by this disgusting illness.George told it like it is and that includes saying I am done here.God bless George.

George was very honest, and did tell it like it is. He had reached his tipping point, and did what he felt needed to be done. Why suffer for the sake of suffering? If we treated our pets the way we do extremely sick people, we'd be called inhumane.

Hi Marc, I always feel like I say the same stupid things over and over again after I read your amazing blog posts. This one though, and after reading The Greek's last post, has allowed me to drop all bullshit and post what I am really feeling.

This may make some people uncomfortable, but I love you as the great person you are. I love the fact that I know you, even though it is one sided. You need to know that you touch all of us immensely. That people like The Greek don't get enough credit in this world and he deserves to be known to the world for his courage and bravery, as do you. Sometimes I think I rather fight 1,000,000 terrorists for 100 years than deal with my neurological disease and it's effects for even one year. Life is so F'ing frustrating sometimes and I just want to scream! I feel so petty sometimes after I complain and then realize I have nothing to complain about. I wish I could shake your hand. Too bad I live on the west coast and I'm afraid to fly, HAHA! I'm afraid to fly.....sounds so dumb after reading your blog. How can I be afraid to fly after dealing with my disease? Like you've mentioned many times, all that time wasted on stuff that didn't even matter. If nothing else, thank you and The Greek for true perspective and helping me focus on what really matters. May you continue to draw courage and strength from whatever magic well you have found. I am very sorry for the loss of your friend. Sincerely, David Hilliard

Hi David, thanks so much for your effusive praise, but it sounds like your no slouch in the courage department, either. And really, is what we display courage? I simply get up every day and try to go about my business the best I can. Believe me, some days the best I can isn't all that spectacular. Dealing with this illness has helped strip away a lot of the minutia, but still I sometimes get lost in the weeds. Sometimes it takes getting lost to really find yourself, unfortunately.

Living day to day with this terrible disease is a terrifying ordeal for all who were forced to go through it, but the only way out is through. The disease tends to shrink your world, and so far, luckily, though smaller I still find the world a fascinating place. George's world had shrunk to the point where it held no appeal whatsoever. May none of us ever reach that place, but if I do I hope I have the courage that George displayed when he got there…

Dear Marc, Thank you for introducing me to George, the Greek from Detroit. You've done so in a way which causes me to wish I'd met him, in person or at least to have been reading his Blog. A serious case of serendipity and it's partner, timing (as you mentioned), jumps out strongly throughout. Hilda, George's Mom, being as something of an earth angel acting as the conduit for the meeting when that window of opportunity opened, to connect you two. What a guy and what a guy! Clearly, you two were just what the Dr. didn't know to order, as powerful medicine for each other.

It is not just the expected phrasing and not lightly, but deeply, that I now convey my deep condolences to you for the loss of your friend. It is also my hope that Hilda will read thisnote too. May God Bless You - no one could ask for a better mother - loving and selfless enough to be supportive of his decision when that 'Tipping Point' was reached.

I'm reading everything...and while I thank all of you for your understanding and accolades. let me tell you, I would rather have wrestled with the devil than give up my son. But, he was a MAN, and I respected him too much to denigrate his intelligence and the validity of his suffering by spouting trite or false platitudes. I loved him enough to let him go his own way. I miss him every minute and I wish that I could have just traded places with him. Life can really stink, and right now, it does. But, when the wind blows, George and I have a connection. I know he is now free and he knows that I understood.

If just one person understands you in your life, you have been gifted. I was gifted with a son who "got" me and I "got" him. I think the gods were jealous. But, that is another story.

Dale, my meeting George was indeed serendipitous. I only wish I had known him when we were both healthy, it would've been real nice to shoot the shit with him over a couple of beers. Unfortunately, that's not what the fates had in mind, and I only hope he took as much comfort in me as I did in him. As for Hilda, she is simply an incredible woman, like her son truly one-of-a-kind. Her courage as George faced his end was immense, and when she's up to it I'm sure that she will tell her side of the tale. Suffice it to say that Hilda, like her son, displayed the true way of the warrior…

Hello Greek's mom!I think about your George often- imagining him in his new perfect body that God promises us. I'm looking forward to that new body as well.You'ved peaked my curiosity. How do you pronounce your Greek name, if you don't mind my asking?Dee/OH

Dee....in Greek , the X is pronounced like a soft "H". The a and i are linked and said as "long i and long e. The d is "th" and the w is "O". so it is hietho, with the i and e separated. Hard to pronounce if you do not speak a foreign language. It was my maternal grandmother's name, Greek Macedonian. Much prettier than Hilda, the battle maiden.

Hi Marc, I don't know if this is appropriate to post here and now, but I need to before I forget. My mind isn't as sharp as it used to be. I realize retrospectively that I had interacted with the Greek in some comments sections of other blogs. I'm sad to know he is gone as I appreciated his forthrightness.

Anyhow. I went back to read your old posts starting at the beginning, and I realize I have been following you for just under 4 years! Time flies.

Thank you for being open and honest about your experience over the years. You are a fine writer -- sardonic, self-effacing, humorous, and blunt. It is much appreciated.

I look forward to hearing more from you. I worry about you as you used to post much more regularly, but of course I understand the progressive nature of this wretched disease. I hope your health is well these days.

Thanks again. Has anyone ever suggested that you compile these essays together and publish them as a book? Go for it!!

Hello old follower, and thanks for being an old follower. George was definitely forthright, no bullshit about him.

Thanks for your extremely kind words about my writing skills. I have given thought to trying to get my essays published, but honestly don't know where to start. It's one of those projects I keep telling myself I'll get to, and somehow never do.

I won't lie, my disease progression has definitely played a role in the diminished frequency of my blog posts. So, too, though is my desire to not keep going over old territory. I'd rather not post just for the sake of posting, as for me it's always been about quality, not quantity. It would be nice if this decision was truly dictated by choice, but, yes, physical realities do come into play…

Marc, thanks for everything you have meant and done for George and his family. I was one of George's friends in his college fraternity.

Your words are so kind and compelling when u speak of him. As you already know he was all that and more to all of us who knew George. I will always carry him in my heart for the rest of my days. Thank you for being you. I have never met you but I now think of you as a friend.

So sorry about the loss of George. I do think the pump is more of an invasive surgery than I realized also. I finally think it was worth all the pain after a year later. What George went through was horrific. I have wondered in the beginning with my pump...Is this pump going to kill me? but Thankfully it works for me now.

Mr. Kamikaze sir, I appreciate the farewell. He was a good man. Can't say I would've reacted the way he did, but who can really judge unless placed in those same shoes? He was in pain then as I am now--emotionally. I suppose it took what it took for peace and even through the confusion, thee angst and the anguish, he's still my dad. We're all our parents, but we are not our parents' choices.Niko

Niko, I can only imagine the jumble of painful emotions that you are currently trying to work through. At the risk of sounding like an old fart, time will be your biggest ally in helping reach some understanding, and to salve your wounds. Your dad talked to me at great length about you and your siblings. He loved you all dearly, was incredibly proud of your achievements, and was a tremendous fan of your many talents and gifts.

Your comment here displays an intellect, wisdom, and emotional maturity rare in a young man your age. Please know that your dad never meant to cause you pain, but don't feel bad about feeling the loss. If you ever feel the need to talk with somebody outside of your immediate circle, just know that I am here for you. You can email me at WheelchairKamikaze@Gmail.com, and we can take it from there…

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...